Leprosy Mailing List, December 11th, 2008
Ref.: Community-based Rehabilitation (CBR) Congress, Bangkok, Feb. 2009
From: Deepak S
Dear friends,
This is to inform you that the new dates for the Community-based Rehabilitation (CBR) Congress and the different workshops including the workshop on "CBR and Leprosy" have been decided as follows:
13-14 February 2009 Pre-congress workshop on CBR and Mental Health
16-17 February 2009 Pre-congress workshop on CBR and UN Convention
18-20 February 2009 Asia Pacific CBR Congress
21-22 February 2009 Post-congress workshop on CBR and Leprosy
All the different events, congress and workshops, will take place at Prince Palace Hotel, Bangkok. Updated information about the workshops including back ground documents, draft programmes and registration forms are available from the following AIFO Italy webpage:
<http://www.aifo.it/english/resources/announcements/2008/bangkok_cbr_workshops08.htm>
Thank you in advance for your collaboration. With best wishes,
Dr Sunil Deepak
AIFO, Italy
Thursday, December 11, 2008
Consultation on “Elimination of discrimination against persons affected by leprosy and their family members”. Geneva, 15 January 2009
Leprosy Mailing List, December 10th, 2008
Ref.: Consultation on “Elimination of discrimination against persons affected by leprosy and their family members”. Geneva, 15 January 2009
From: Soutar D., London, UK
<<Information Note -15 01 09 leprosy-related discrimination (2).doc>>
Dear Salvatore,
Please can you post the attached information on an important consultation being held in Geneva on 15th January? I should also note that the Nippon Foundation/Sasakawa Memorial Health Foundation are also sponsoring a second day of informal consultation in the same place on the 16th January. I hope all those who are interested to ensure that there is contribution from people affected by leprosy will do all they can to facilitate their participation.
Regards,
Douglas Soutar
Mr Douglas Soutar
General Secretary
International Federation of Anti-Leprosy Associations
doug.soutar (at) ilep.org.uk
http://www.ilep.org.uk/
Tel: + 44 (0)20 7602 6925
Ref.: Consultation on “Elimination of discrimination against persons affected by leprosy and their family members”. Geneva, 15 January 2009
From: Soutar D., London, UK
<<Information Note -15 01 09 leprosy-related discrimination (2).doc>>
Dear Salvatore,
Please can you post the attached information on an important consultation being held in Geneva on 15th January? I should also note that the Nippon Foundation/Sasakawa Memorial Health Foundation are also sponsoring a second day of informal consultation in the same place on the 16th January. I hope all those who are interested to ensure that there is contribution from people affected by leprosy will do all they can to facilitate their participation.
Regards,
Douglas Soutar
Mr Douglas Soutar
General Secretary
International Federation of Anti-Leprosy Associations
doug.soutar (at) ilep.org.uk
http://www.ilep.org.uk/
Tel: + 44 (0)20 7602 6925
Referral or consultation facility to improve the quality of patient management in leprosy
Leprosy Mailing List, December 10th, 2008
Ref.: Referral or consultation facility to improve the quality of patient management in leprosy.
From: Vijayakumaran, P., Chennai, India
Dear Salvatore,
Greetings from Damien Foundation India Trust. I would like to comment on the debate about the use of steroids for management of reactions in leprosy.
All the experts agree that dose of steroid and duration of therapy may be decided on individual patient basis. This is possible in specialised institutions. What about the field situation ? Where:
- management is mainly by non-medical personnel trained in leprosy;
- specialised referral centres are not available.
Even a medical person in general health care system may not be able to assess the needs in many situations. They need a simple straight forward steroid regimen. That is what many agencies including WHO have done.
This argument will never end. Experts in this field need to help those in need. The problem in the current scenario has been well recognised by the statement in the communication: << "there is a threat that field staff with good clinical knowledge of leprosy are tending to extinction; there is in addition an on-going debate regarding the threat of not having dedicated training facilities!" >> (Kawuma J, LML Dec. 8th, 2008). I would also add that it is not possible to clone Naafs and Kar!
Let us try to establish referral facility or consultation facility to improve the quality of patient management in leprosy.
Dr. P. Vijayakumaran
Director (Prog)
Damien Foundation India Trust
Chennai 600031, India
Ref.: Referral or consultation facility to improve the quality of patient management in leprosy.
From: Vijayakumaran, P., Chennai, India
Dear Salvatore,
Greetings from Damien Foundation India Trust. I would like to comment on the debate about the use of steroids for management of reactions in leprosy.
All the experts agree that dose of steroid and duration of therapy may be decided on individual patient basis. This is possible in specialised institutions. What about the field situation ? Where:
- management is mainly by non-medical personnel trained in leprosy;
- specialised referral centres are not available.
Even a medical person in general health care system may not be able to assess the needs in many situations. They need a simple straight forward steroid regimen. That is what many agencies including WHO have done.
This argument will never end. Experts in this field need to help those in need. The problem in the current scenario has been well recognised by the statement in the communication: << "there is a threat that field staff with good clinical knowledge of leprosy are tending to extinction; there is in addition an on-going debate regarding the threat of not having dedicated training facilities!" >> (Kawuma J, LML Dec. 8th, 2008). I would also add that it is not possible to clone Naafs and Kar!
Let us try to establish referral facility or consultation facility to improve the quality of patient management in leprosy.
Dr. P. Vijayakumaran
Director (Prog)
Damien Foundation India Trust
Chennai 600031, India
Thalidomide for the treatment of ENL reaction
Leprosy Mailing List, December 10th, 2008
Ref.: Thalidomide for the treatment of ENL reaction
From: de Koning P., Würzburg , Germany
Dear Salvatore,
I am amazed that nobody even mentions the benefits of thalidomide. In my view it has been discarded too easily, and patients such as the one described by Dr. Uwyse (LML Nov. 1st , 2008) suffer the consequences.
Greetings,
Pieter de Koning
Dr. Pieter de Koning, MD, MPH
Medical Advisor
Deutsche Lepra- und Tuberkulosehilfe e.V (DAHW)
Mariannhillstraße 1c, 97074 Würzburg
Telefon: ++49 (0)931 7948-113, Fax: -160
pieter.de-koning (at) dahw.de
Ref.: Thalidomide for the treatment of ENL reaction
From: de Koning P., Würzburg , Germany
Dear Salvatore,
I am amazed that nobody even mentions the benefits of thalidomide. In my view it has been discarded too easily, and patients such as the one described by Dr. Uwyse (LML Nov. 1st , 2008) suffer the consequences.
Greetings,
Pieter de Koning
Dr. Pieter de Koning, MD, MPH
Medical Advisor
Deutsche Lepra- und Tuberkulosehilfe e.V (DAHW)
Mariannhillstraße 1c, 97074 Würzburg
Telefon: ++49 (0)931 7948-113, Fax: -160
pieter.de-koning (at) dahw.de
Steroid therapy in leprosy should be individualised
Leprosy Mailing List, December 8th, 2008
Ref.: Steroid therapy in leprosy should be individualised.
From: Nunzi E., Genoa, Italy
Dear Salvatore,
Leprosy is a bacterial disease where the immune system is strongly involved. This is particularly true in the hyperergic forms of the disease. We use MDT against the bacteria and steroids to control the immunologic hyper-reactivity (reaction) that may damage peripheral nerves and, in type two reaction also eyes, testes, kidneys and so on.
In each patient there is a unique relationship between the bacterial load and the immunologic reaction. The latter tends to increase following the decreasing, with therapy, of the bacterial load. Therefore there is no rational for a standard protocol of treatment for all patients. Naafs and Kar in their messages have correctly pointed out respectively, that leprosy is a disease with a “spectrum” and its treatment should be individualised.
Enrico Nunzi
Ref.: Steroid therapy in leprosy should be individualised.
From: Nunzi E., Genoa, Italy
Dear Salvatore,
Leprosy is a bacterial disease where the immune system is strongly involved. This is particularly true in the hyperergic forms of the disease. We use MDT against the bacteria and steroids to control the immunologic hyper-reactivity (reaction) that may damage peripheral nerves and, in type two reaction also eyes, testes, kidneys and so on.
In each patient there is a unique relationship between the bacterial load and the immunologic reaction. The latter tends to increase following the decreasing, with therapy, of the bacterial load. Therefore there is no rational for a standard protocol of treatment for all patients. Naafs and Kar in their messages have correctly pointed out respectively, that leprosy is a disease with a “spectrum” and its treatment should be individualised.
Enrico Nunzi
Steroid therapy in the management of reactions in leprosy
Leprosy Mailing List, December 8th, 2008
Ref.: Steroid therapy in the management of reactions in leprosy
From: Kawuma J., Kampala, Uganda
Dear Salvatore,
Basing on the various responses on this subject it is clear that something must be done about the current guidelines.
Those needing to prompt change should not only be the WHO Experts but also other opinion leaders in the leprosy world. The circulating issues of the ILEP Learning Guides One and Two also describe standard 12 week regimens for Type 1 reactions in PB patients.
Whatever the new guidelines are, they should take serious consideration of the current status of leprosy control programmes in Africa; there is a threat that field staff with good clnical knowledge of leprosy are tending to extinction; there is in addition an on-going debate regarding the threat of not having dedicated training facilities!
Joseph Kawuma
GLRA, Uganda
Ref.: Steroid therapy in the management of reactions in leprosy
From: Kawuma J., Kampala, Uganda
Dear Salvatore,
Basing on the various responses on this subject it is clear that something must be done about the current guidelines.
Those needing to prompt change should not only be the WHO Experts but also other opinion leaders in the leprosy world. The circulating issues of the ILEP Learning Guides One and Two also describe standard 12 week regimens for Type 1 reactions in PB patients.
Whatever the new guidelines are, they should take serious consideration of the current status of leprosy control programmes in Africa; there is a threat that field staff with good clnical knowledge of leprosy are tending to extinction; there is in addition an on-going debate regarding the threat of not having dedicated training facilities!
Joseph Kawuma
GLRA, Uganda
In Reactions the therapy has to be tailored according to the clinical response
Leprosy Mailing List, December 7th, 2008
Ref.: In Reactions the therapy has to be tailored according to the clinical response
From: Palande Dinkar D., Kurichikuppam, Pondicherry, India
Dear Dr. Noto,
I fully endorse what Ben Naafs says (LML Dec. 2nd, 2008). In Reactions and nerve involvement, even though operationally difficult, the therapy HAS to be tailored according to the clinical response and it is not uncommon to find it necessary to continue steroids more than 3 months. Of course all care has to be taken to prevent steroid induced complications and often one had to add additional measures like increasing the dose of Lamprene in Type 2 reactions.
Warm regards,
Dinkar D Palande
Ref.: In Reactions the therapy has to be tailored according to the clinical response
From: Palande Dinkar D., Kurichikuppam, Pondicherry, India
Dear Dr. Noto,
I fully endorse what Ben Naafs says (LML Dec. 2nd, 2008). In Reactions and nerve involvement, even though operationally difficult, the therapy HAS to be tailored according to the clinical response and it is not uncommon to find it necessary to continue steroids more than 3 months. Of course all care has to be taken to prevent steroid induced complications and often one had to add additional measures like increasing the dose of Lamprene in Type 2 reactions.
Warm regards,
Dinkar D Palande
Tuesday, December 2, 2008
Steroid therapy in the management of reactions in leprosy
Leprosy Mailing List, December 2nd, 2008
Ref.: Steroid therapy in the management of reactions in leprosy.
From: van Brakel W. H., Amsterdam, The Netherlands
Dear Salvatore,
I would like to respond to Prof. Kar's plea (LML Nov. 30th, 2008) for a multi-centre trial to determine an optimal steroid regimen. I fully agree. In fact, a proposal for such a study, called the TENLEP Trials (Treatment of Early Neuropathy in Leprosy), was submitted to four funding organisations in August. This collaborative project combines the efforts of some 10 research centres in 6 countries. The study combines two trials, one to test to prognostic benefit of treating sub-clinical neuropathy detected a diagnosis and the other to find an optimal duration and dosage for steroid treatment of clinical nerve damage of recent onset occurring as part of a Type 1 or 2 reaction or silent neuropathy.
Unfortunately, it appears that the urgency for such a study is not acknowledged everywhere. We have not been able to find sufficient funds to start these trials in 2009. If anyone knows of other funding sources interested to support this research, we would be very happy to hear from them!
With friendly greetings,
Wim van Brakel
Reply email address: w.v.brakel (at) kit.nl
Wim H. van Brakel
KIT Leprosy Unit
Wibautstraat 137 J
1097DN Amsterdam
Netherlands
+3120 6939297
http://www.kit.nl/
Ref.: Steroid therapy in the management of reactions in leprosy.
From: van Brakel W. H., Amsterdam, The Netherlands
Dear Salvatore,
I would like to respond to Prof. Kar's plea (LML Nov. 30th, 2008) for a multi-centre trial to determine an optimal steroid regimen. I fully agree. In fact, a proposal for such a study, called the TENLEP Trials (Treatment of Early Neuropathy in Leprosy), was submitted to four funding organisations in August. This collaborative project combines the efforts of some 10 research centres in 6 countries. The study combines two trials, one to test to prognostic benefit of treating sub-clinical neuropathy detected a diagnosis and the other to find an optimal duration and dosage for steroid treatment of clinical nerve damage of recent onset occurring as part of a Type 1 or 2 reaction or silent neuropathy.
Unfortunately, it appears that the urgency for such a study is not acknowledged everywhere. We have not been able to find sufficient funds to start these trials in 2009. If anyone knows of other funding sources interested to support this research, we would be very happy to hear from them!
With friendly greetings,
Wim van Brakel
Reply email address: w.v.brakel (at) kit.nl
Wim H. van Brakel
KIT Leprosy Unit
Wibautstraat 137 J
1097DN Amsterdam
Netherlands
+3120 6939297
http://www.kit.nl/
Steroid therapy in the management of reactions in leprosy
Leprosy Mailing List, December 2nd, 2008
Ref.: Steroid therapy in the management of reactions in leprosy.
From: de Koning P., Würzburg, Germany
Dear colleagues,
The guidelines for treatment of leprosy reactions urgently need to be reviewed. For treatment in the field 12 weeks of prednisolone (in blister packs) is recommended by WHO for both type I and type II reactions. Evidence suggests that this is either not long enough (for type I) or too long and with an insufficiently high starting dose (type II).
For “severe reaction“ the recommendation is that a patient should be referred to experts and treated for “3-6 months“. However, these experts are becoming increasingly rare, and most health workers at grass root level follow the 12-week guideline, which is probably as good as doing nothing at all.
Kind regards,
Dr. Pieter de Koning
Medical Advisor
DAHW, Würzburg, Germany
Ref.: Steroid therapy in the management of reactions in leprosy.
From: de Koning P., Würzburg, Germany
Dear colleagues,
The guidelines for treatment of leprosy reactions urgently need to be reviewed. For treatment in the field 12 weeks of prednisolone (in blister packs) is recommended by WHO for both type I and type II reactions. Evidence suggests that this is either not long enough (for type I) or too long and with an insufficiently high starting dose (type II).
For “severe reaction“ the recommendation is that a patient should be referred to experts and treated for “3-6 months“. However, these experts are becoming increasingly rare, and most health workers at grass root level follow the 12-week guideline, which is probably as good as doing nothing at all.
Kind regards,
Dr. Pieter de Koning
Medical Advisor
DAHW, Würzburg, Germany
Steroid therapy in the management of reactions in leprosy
Leprosy Mailing List, December 2nd, 2008
Ref.: Steroid therapy in the management of reactions in leprosy (see attachment 1 & attachment 2)
From: Naafs B., Bauru, SP, Brazil
Dear Salvatore,
I agree fully with you (LML Nov. 30th, 2008) that there is NO EVIDENCE at all, for the 3-month steroid treatment. It is too short for quite a number of patients. Many patients deteriorate after the cessation of the 3 month treatment. Unluckily for them often the damage is silent. I had hoped that after my papers, which are enclosed (attachment 1, attachment 2 - in PDF), people would come to their senses. I am of the opinion that to continue the 3 month advice is unscientific and would not hold in any court.
I think it is near criminal to neglect the accumulated evidence against only 3 month of treatment in Type I reaction, where it invites problems when you use it in Type 2 reactions.
Why do WHO "experts" not listen to patients and their doctors and do not realise that leprosy is a spectral disease and moreover that leprosy in one geographical area is not that in another and that just looking at the Bangladesh trials is short-sighted and biased.Greetings from Brazil,
Ben Naafs
Ref.: Steroid therapy in the management of reactions in leprosy (see attachment 1 & attachment 2)
From: Naafs B., Bauru, SP, Brazil
Dear Salvatore,
I agree fully with you (LML Nov. 30th, 2008) that there is NO EVIDENCE at all, for the 3-month steroid treatment. It is too short for quite a number of patients. Many patients deteriorate after the cessation of the 3 month treatment. Unluckily for them often the damage is silent. I had hoped that after my papers, which are enclosed (attachment 1, attachment 2 - in PDF), people would come to their senses. I am of the opinion that to continue the 3 month advice is unscientific and would not hold in any court.
I think it is near criminal to neglect the accumulated evidence against only 3 month of treatment in Type I reaction, where it invites problems when you use it in Type 2 reactions.
Why do WHO "experts" not listen to patients and their doctors and do not realise that leprosy is a spectral disease and moreover that leprosy in one geographical area is not that in another and that just looking at the Bangladesh trials is short-sighted and biased.Greetings from Brazil,
Ben Naafs
Revue de presse: "The associated diseases with leprosy"
Leprosy Mailing List, November 30th, 2008
Ref.: Revue de presse: "The associated diseases with leprosy"
From: Al Aboud K., Mecca, Saudi Arabia
Dear Dr Noto,
Greetings,
Sometimes ago, I saw a leprosy patient with extensive pediculosis. I thought this might be due to neuropathy, therefore the patient will not have itch caused by lice. On reviewing the MEDLINE, I could find that many diseases might be encountered with leprosy patients, like scabies, Tineas, pediculosis and others. Theses are listed in this reference:-
Singh M, Kaur S, Kumar B, Kaur I, Sharma VK. The associated diseases with leprosy. Indian J Lepr. 1987 Jul-Sep;59(3):315-21.
I just would like to remind the LML members with a known fact that, detailed examination is important in leprosy patient. Specially scalp examination, which in many countries is covered by scarf.
Yours sincerely,
Dr Khalid Al Aboud
Medical Director and Consultant Dermatologist
King Faisal Hospital ,
P.O Box 5592
Makkah
Saudi Arabia
Tel 0096625566411 ext 6666
Fax: 0096625563523
E-mail alaboudkhalid (at) yahoo.ca
This is the link
1987 Jul-Sep;59(3):315-21, The associated diseases with leprosy Singh M, Kaur S, Kumar B, Kaur I, Sharma VK. Department of Dermatology, Postgraduate Institute of Medical Education and Research, Chandigarh.
”The prevalence of cutaneous, medical and surgical disorders was studied in 846 leprosy patients. Common cutaneous disorders among leprosy patients were pityriasis versicolor, tinea, pyodermas, warts, acquired ichthyosis, scabies, pediculosis and callosities. Only pityriasis versicolor had higher incidence when compared to general population. Common medical diseases were tuberculosis, infective hepatitis and diabetes mellitus. The epidemiological importance of their co-existence with leprosy is discussed and relevant literature of other diseases found to be frequently associated with leprosy is reviewed.”
Ref.: Revue de presse: "The associated diseases with leprosy"
From: Al Aboud K., Mecca, Saudi Arabia
Dear Dr Noto,
Greetings,
Sometimes ago, I saw a leprosy patient with extensive pediculosis. I thought this might be due to neuropathy, therefore the patient will not have itch caused by lice. On reviewing the MEDLINE, I could find that many diseases might be encountered with leprosy patients, like scabies, Tineas, pediculosis and others. Theses are listed in this reference:-
Singh M, Kaur S, Kumar B, Kaur I, Sharma VK. The associated diseases with leprosy. Indian J Lepr. 1987 Jul-Sep;59(3):315-21.
I just would like to remind the LML members with a known fact that, detailed examination is important in leprosy patient. Specially scalp examination, which in many countries is covered by scarf.
Yours sincerely,
Dr Khalid Al Aboud
Medical Director and Consultant Dermatologist
King Faisal Hospital ,
P.O Box 5592
Makkah
Saudi Arabia
Tel 0096625566411 ext 6666
Fax: 0096625563523
E-mail alaboudkhalid (at) yahoo.ca
This is the link
1987 Jul-Sep;59(3):315-21, The associated diseases with leprosy Singh M, Kaur S, Kumar B, Kaur I, Sharma VK. Department of Dermatology, Postgraduate Institute of Medical Education and Research, Chandigarh.
”The prevalence of cutaneous, medical and surgical disorders was studied in 846 leprosy patients. Common cutaneous disorders among leprosy patients were pityriasis versicolor, tinea, pyodermas, warts, acquired ichthyosis, scabies, pediculosis and callosities. Only pityriasis versicolor had higher incidence when compared to general population. Common medical diseases were tuberculosis, infective hepatitis and diabetes mellitus. The epidemiological importance of their co-existence with leprosy is discussed and relevant literature of other diseases found to be frequently associated with leprosy is reviewed.”
Steroid therapy in the management of reactions in leprosy
Leprosy Mailing List, November 30th, 2008
Ref.: Steroid therapy in the management of reactions in leprosy.
From: Noto S., Genoa, Italy
Dear Prof Smith,
Thank you very much for your LML message dated Nov. 22nd, 2008.
I would like to comment that there is no evidence in favour of treating severe leprosy reactions in highly positive slit-skin smear positive patients with only a three-month course of steroids.
With regards,
S. Noto
Ref.: Steroid therapy in the management of reactions in leprosy.
From: Noto S., Genoa, Italy
Dear Prof Smith,
Thank you very much for your LML message dated Nov. 22nd, 2008.
I would like to comment that there is no evidence in favour of treating severe leprosy reactions in highly positive slit-skin smear positive patients with only a three-month course of steroids.
With regards,
S. Noto
Steroid therapy in management of reactions in leprosy
Leprosy Mailing List, November 30th, 2008
Ref.: Steroid therapy in management of reactions in leprosy.
From: Kar H. K., New Delhi, India
Dear Dr Noto,
I refer to Dr A. Diefenhardt’s LML message from Wurzburg dated Nov. 21st, 2008.
I fully agree with him regarding the duration of steroid therapy for management of reactions in leprosy. It is individualised depending on the type of reaction, severity, frequency of recurrence, therapy and so many other factors. However, there is urgent need of a multi-centric trial for development guidelines for management of type 1 and type 2 reactions.
The present recommendation by WHO is not sufficient to deal with this crucial aspect of the management of leprosy. Particularly attention is needed for the duration of steroid therapy in severe cases.
With regards,
Dr (Prof.) H K Kar
MD, MNAMS
Consultant & HOD
Department of Dermatology, STD & Leprosy
PGIMER, Dr Ram Manohar Lohia Hospital
Baba Kharag Singh Marg
New Delhi-110001
India
Ref.: Steroid therapy in management of reactions in leprosy.
From: Kar H. K., New Delhi, India
Dear Dr Noto,
I refer to Dr A. Diefenhardt’s LML message from Wurzburg dated Nov. 21st, 2008.
I fully agree with him regarding the duration of steroid therapy for management of reactions in leprosy. It is individualised depending on the type of reaction, severity, frequency of recurrence, therapy and so many other factors. However, there is urgent need of a multi-centric trial for development guidelines for management of type 1 and type 2 reactions.
The present recommendation by WHO is not sufficient to deal with this crucial aspect of the management of leprosy. Particularly attention is needed for the duration of steroid therapy in severe cases.
With regards,
Dr (Prof.) H K Kar
MD, MNAMS
Consultant & HOD
Department of Dermatology, STD & Leprosy
PGIMER, Dr Ram Manohar Lohia Hospital
Baba Kharag Singh Marg
New Delhi-110001
India
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